Lupus Support Group

[size=4][/size]Hello everybody! My diagnosis of lupus came in 2001 after years of treatment testing by my PCP and rheumatologist. This diagnosis came about one year after I was diagnosed with Myasthenia Gravis.

I live on the west coast of Florida (rotten environment for "MG"). My health issues include more but for now, this will have to do as the arthritis in my hands is starting to scream at me.

Look forward to being a member of this group.

Lynne

Hi Lynn, I am so glad you joined the group. How is the Lupus in that climate? I look forward to getting to know you.

-Jen

As I have been in Florida since 1987, and the lupus diagnosed in 2001, I don't have anything to compare my lupus symptoms vs. hot/humid. However, the Myasthenia Gravis, which is a chronic incurable (and rare 20/100,000) neuromuscular disease is affected by extreme temperatures--both hot and cold. The heat here in FL is murder. You would think I'm tanned, but I am not. I look like Casper the ghost! I refer to it as my "moon tan." The heat from the sun and air predisposes me to an MG crisis...respiratory arrest. I don't notice any difference in temps with the lupus, but that's probably because the Osteoarthritis is affected by the colder and humid temps we are now having down here.

Do you take Neurontin for your neuropathy? I also have spinal cord compression in three areas, severe degenerative disk disease and annular bulges; oh, and scoliosis. Some of my neuropathy is due to nerve compression in my neck and the rest is my back. My doctors tell me I have the spine of an 80-yo woman; and they told me that the first time when I was 37. My maternal side of family has Multiple Epiphyseal Dysplasia...a bone disease that includes bone tumors, often requiring hip replacements. So far, I've avoided THAT surgery. I've had 16 major ops. Don't care to go through another one.

Is it really cold where you are now and how does that affect your system?

Thanks, Jen, for responding. I feel like I can step out of the shadows now.

Lynne

I am so glad, it's nice to have someone to talk to who understands. Yes I take neurontin but I don't thnk it helps. I live in Ca. So it's just basically different degrees of hot, I live in the valley. I had back surgery when I was 19. I had l-3 to s-1 worked on, it was awful I developed the fibro right after that. I have been told that I need surgery again but one thing at a time, I can only take so much. I also have osteoporosis in my spine and right hip. I can't believe you have had 16 operations, wow, you are one tough cookie. I am going to see a new pain management specialist next week, I am hoping for some relief.

-Jen

Hey, Jen,

Just checking in to see how you are doing. I hope you are able to find some relief for the pain you area dealing with. I have yet to meet a person whose had a successful back surgery so I take different avenues for my pain. Accupuncture seems to help and if you can find a qualified neuromassage therapist, that's icing on the cake! My neurologist forbids me to see a chiropractor due to the partial and "not-so-partial" cord compression. You've propbably run the gammit of stretching exercises, physical therapy, etc., that I have.

Thinking of you and hoping for the best. If you feel like screaming on a rotten day, holler--I'm never far away.

Hugs,

Bless your heart 16 major ops! I live in Central Florida, so I completely understand Hot and Humid!

I take lyrica for the neuropathy. It has helped more then the neurotin. As the nerologist told me lyrica is actually a super neuropathy.